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Oncofertility Decision Tool Web Portal

In the last decade, a great deal of progress has been made in terms of improving clinician-patient education, communication, and decision support with regard to oncofertility and fertility preservation. The Oncofertility Decision Tool Web Portal hosts decision tools designed to help health care providers navigate fertility preservation options discussions with their patients.

Decision Tools

Decision Tools are designed to enable oncofertility stakeholders to take action. They provide information to help health care providers guide patients through their fertility preservation options and help them make the best decision based on their cancer treatment, lifestyle, values, and future fertility goals.

FertiQoL is an internationally validated self-report questionnaire physicians can administer to patients struggling with infertility (independent of infertility treatment status) in order to assess the quality of life of an individual with infertility. The tool has been designed to facilitate improvement in the quality of life of those with infertility. The questionnaire takes approximately 10-15 minutes to complete and covers four domains (overall, personal, interpersonal, and healthcare) and nine dimensions (emotional, psychological, physical, values, partner relationship, social network, occupational/work, medical, and psychoeducational).

Learning about Cancer and Fertility: A Guide for Parents of Young Girls is a decision aid designed for parents of young girls diagnosed with cancer. Developers created this paper-based tool that focuses on the child's survival rather than future fertility, however it also outlines available fertility preservation options. The focus of the tool is not just for making fertility preservation decisions but also serves as a guide to give parents information that will help them talk with their child's healthcare team now and in the future as she grows.

Oncofertility Decision-Making Publications

Many publications are available to providers interested in learning more about patient and provider oncofertility conversation starters, techniques, interventions, and assessments.

In this chapter from Oncofertility Communication (2014), read about a series of retrospective focus groups conducted with adult women who were diagnosed with various forms of cancer between ages 14 and 20. Highlights include:

Primary concerns at diagnosis

Missing information about fertility preservation

Patient role in decision-making

Sexual health

The chapter also provides health care providers with strategies for fertility preservation counseling.

This chapter from Oncofertility Communication (2014) is specifically written to help health care providers discuss fertility preservation options with women who have hereditary cancer predisposition syndromes, or "previvors", who are 1) at increased risk of developing premenopausal breast or ovarian cancer and 2) may require a risk-reducing intervention prior to menopause that poses a threat to future fertility. The chapter addresses:

Who are high-risk patients?

How do we estimate 5-year and lifetime risk of breast cancer?

What are the accepted prophylactic interventions for high-risk patients?

How do we communicate with high-risk patients?

What are the treatment guidelines for fertility preservation in young women at high risk for breast or ovarian cancer?

The chapter also includes two case examples providers can read to familiarize themselves with the unique situation of high-risk women.

This chapter from Oncofertility Communication (2014) addresses the issue of communication between patients and their partners. Learn about the impact of fertility preservation and infertility on couples and the communication needs of adult cancer patients and their partners. Encourage your patients and their partners to consider the following issues when approaching oncofertility communication:

What is the impact of potential infertility on cancer patients, their partners, and the couple’s relationship?

What are the fertility preservation options available to women and men and how might these options affect the couple?

What are the ethical and legal concerns of fertility preservation faced by couples?

How should partners be involved in oncofertility communication and decision-making?

How can couples’ communication surrounding fertility preservation and potential infertility be improved in order to promote shared decision-making and reduce marital distress caused by fertility issues related to cancer treatment?

This chapter from Oncofertility Communication (2014) addresses the barriers to discussing fertility preservation with adolescents and the disparities that currently exist in communicating the topic of fertility preservation to the adolescent patient population.

Learn about the many available ways health care providers and the public can learn about oncofertility in this chapter from Oncofertility Communication (2014). The following communication tools are discussed:

This study involved the creation of two versions of gender concordant brochures on fertility preservation desgined for pediatric oncology patients and their parents. Feedback was obtained and incorporated into the final version of the brochures.

Health care providers can use the brochures to facilitate fertility preservation discussions with male and female pediatric patients.

Face-to-face communication between health care providers and patients is the most effective way to convey complex information regarding cancer treatment and fertility. This Chapter from Oncofertility Medical Practice Clinical Issues and Implementation (2012) describes how clinicians can more effectively conduct discussions about fertility with patients who have received a recent cancer diagnosis. Contains:

A 10 item Reproductive Concerns Scale (RCS) adapted specifically for use with adolescents

Adolescent Fertility Values Clarification Tool: a priming tool for future-decision making that uses open-ended statements to encourage dialogue that allows adolescents to process the idea of having children before discussing the effects of cancer treatment on fertility

This chapter from Oncofertility Medical Practice Clinical Issues and Implementation (2012) describes ways to improve the fertility preservation consult using teams of providers that are unifed by allied health professionals, with emphasis on the role of patient navigators and nursing in the care of the oncofertility patient. Read about:

This article reviews several fertility-threatening conditions, treatments, and current established and experimental fertility preservation options. Some of the nonmalignant diseases and treatments that can impact reproductive function include:

Patients may consult, invoke, or defer to religious beliefs, sources, or leaders when making decisions about their own medical treatment or treatment for a surrogate (e.g., a chld or incompetent parent or partner), including decisions about whether to seek access to oncofertility reserach protocols or technologies and determining which types of research protocols or technologies they wish to pursue. Therefore, understanding a patient's religious commitments is one critical part in oncofertility discussions so that physicians and family members may better communicate with a patient who draws upon religion to cope with an illness or make medical care decisions. This chapter briefly explores the following religous traditions and their anticipated or potential contributions to the ethical discourse surrounding oncofertility:

This chapter from Oncofertility Fertility Preservation for Cancer Surivors (2007) discusses how the key constructs from family systems theory and the shared decision-making model are used to understand how families whose children are newly diagnosed with cancer can make informed choices about the future fertility of their children. Includes:

The CART captures unique concerns experienced by women undergoing IVF or GIFT (gamete intrafallopian transfer), prior to, during, and after treatment, which are not evaluated by other existing instruments. Validity and reliability are adequate, and the instrument does not appear to be related to demographic factors.

Clinical Guidelines, Recommendations, Policy Statements & Opinions

As a health care provider who treats patients interested in fertility preservation options, it is important to stay up to date regarding the published clinical guidelines, recommendations, and opinions of professional organizations involved with the care and treatment of fertility preservation patients.

Education and enhanced awareness of the effect of age on fertility are essential in counseling the patient who desires pregnancy. Given the anticipated age-related decline in fertility, the increased incidence of disorders that impair fertility, and the higher risk of pregnancy loss, women older than 35 years should receive an expedited evaluation and undergo treatment after 6 months of failed attempts to conceive or earlier, if clinically indicated. In women older than 40 years, more immediate evaluation and treatment are warranted. This practice committee opinion can assist with fertility preservation discussions by providing you with age-related fertility rates.

These guidelines focus on the vast and persistent impact both the diagnosis and treatment of cancer have on the adult survivor. This includes the potential impact on health, physical and mental states, health behaviors, professional and personal identity, sexuality, and financial standing.

Risk-based, exposure-related clinical practice guidelines which provide recommendations for screening and management of late effects in survivors of pediatric, adolescent, or young adult malignancies. Clinicians can look up the late effects associated with the patient’s specific treatment or therapeutic agent(s). The guidelines are not specific to risks of infertility, however they do provide limited fertility information.